Download Successful Stroke Support Groups

Successful
Stroke
Support
Groups
Our guide to organizing successful stroke support groups
The American Stroke Association is fighting back
against stroke.
For more than 50 years, the American Heart
Association has funded research to discover new
ways to prevent and treat stroke. We have also
developed programs and patient and professional
education materials to raise public awareness about
this deadly disease. And, in 1998, we created the
American Stroke Association as a division of the
American Heart Association to intensify our efforts
on behalf of stroke survivors and caregivers. Our
activities include:
• Teaching families the warning signs of stroke.
• Funding research to find new ways to prevent
stroke.
• Developing guidelines for physicians to treat
stroke.
• Providing stroke survivors and their families a
place to get answers after stroke.
The American Stroke Association is a nationwide
network of stroke survivors and caregivers sharing
information, experience and support with anyone
affected by stroke. The association also includes
dedicated professionals from many different medical
and research disciplines, all united to reduce
disability and death from stroke.
Table of Contents
Introduction
1
American Stroke Association
I. Why Start a Stroke Support Group?
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4
Living With Stroke: An Adjustment for the
Family
The Need for Peer Support, Hope and
Encouragement
Discovering the Value of Support
Finding a Way To Help
II. How Are Stroke Support Groups
Started?
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5
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Setting Goals
Getting Organized
Finding Leaders and Facilitators
Next Steps
Finding Members
Identifying a Meeting Place
Acquiring Funds for Activities and Other
Expenses
III. How Do We Make Our Stroke Group
a Success?
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11
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Developing Opportunities for Providing Caring
Support
Making Careful Word Choices
Establishing Group Guidelines
Sharpening Your Listening Skills
IV. What Type of Program Activities
Should We Plan?
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20
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Staying Flexible
Providing Structure for Meetings
Deciding on Educational Programs
Planning Social Activities and Entertainment
Challenging Stroke Survivors
Encouraging Group Discussion and Peer
Support
Extending a Helping Hand
V. Will Our Stroke Group Continue To
Grow?
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Watching Group Members Come and Go
Reaching Out to New Members
Keeping Members Informed and Involved
Finding the Secret Formula for Success
VI. What Resources Are Available To Help
Group Leaders?
National
General
Rehabilitation
Caregiver
Mental Health
Financial
Employment
Patient Rights
Children
American Stroke Association
…A Nationwide Network of Stroke Families Helping
Stroke Families
The American Stroke Association, a division of the
American Heart Association, is dedicated to helping
stroke survivors rebuild their lives. The American
Stroke Association’s Stroke Family Support Network
is a clearinghouse of information about stroke
prevention, treatment, rehabilitation and recovery.
It helps consumers learn about stroke…what it is,
where to go and what to expect after a stroke.
Over 1,800 stroke groups and more than 36,000
individuals throughout the United States are part
of the Stroke Family Support Network.
American Stroke Association partners bring hope
and encouragement to the nearly 5 million stroke
survivors in the United States through a wide
variety of peer support and educational services.
The primary network programs, services and
activities are:
800 Stroke Family “Warmline”
A toll-free information and referral line
(1-888-4-STROKE [1-888-478-7653]) helps families
connect with other stroke survivors and caregivers
to get tips on daily living and other peer information
and support. Many of the Stroke Support Specialists
answering the calls are also stroke survivors or
caregivers.
Stroke Connection Magazine
This award-winning, 32-page, four-color, bimonthly
health education and outreach magazine extends
the voice of the American Stroke Association beyond
the network of support groups. Information on stroke
resources, caregiving, treatment advances, self-care
strategies, coping skills and real-life experiences
help stroke families and healthcare professionals
throughout the nation.
Call 1-888-4-STROKE to receive a free copy or visit
StrokeAssociation.org and sign up today.
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National Stroke Group Registry
The American Stroke Association encourages the
development of stroke support groups and provides
resources for them. New stroke groups across the
country are registered, offering many benefits to
stroke group leaders, including referrals of potential
new members, and Stroke Connection Magazine
free for group members.
Patient Education Materials
The American Stroke Association offers magazines,
fact sheets, brochures and other stroke-related
information through the Stroke Family “Warmline,”
1-888-4-STROKE (1-888-478-7653).
American Stroke Association…help us help
others help themselves. Share the American
Stroke Association Stroke Family “Warmline.”
I
Why Start a Stroke Support Group?
Living With Stroke: An Adjustment for the
Family
The Need for Peer Support, Hope
and Encouragement
Relationships often change drastically after
someone has a stroke. Physical difficulties and the
emotional problems a stroke can cause may quickly
change how stroke survivors, their families and
others get along.
Stroke survivors and their family caregivers need
help adjusting to the changes in their lives. That’s
why many stroke survivors join support groups.
Sharing similar problems helps survivors learn to live
with the changes. Stroke support groups offer
survivors, their caregivers and other family members
chances to share concerns and support each other.
They unite around their common experiences and
find positive solutions.
Survivors often say friends and family members feel
uncomfortable around them. “He just is not himself,”
people say. Or, “She is not like she used to be.” The
old circle of family and friends begins to disappear,
and survivors say it’s hard to fit in like they did
before.
After a stroke, even simple things like shopping,
talking on the telephone or taking a walk may seem
impossible. Talking or writing a letter may be too
difficult for a stroke survivor who has problems using
or understanding language. Something as common
as going out to eat can be a major challenge.
Survivors also may not be able to drive a car or use
public transportation. Other day-to-day activities may
become major obstacles to survivors.
Stroke affects more than the survivor. Family
members can also be confused, frustrated and feel
isolated. Relationships may become strained,
especially when a family member becomes a
caregiver. And the caregivers may get angry or feel
guilty about their feelings toward the survivor, who is
taking so much of their time and energy. Individual
family members may have to adjust how they feel
about themselves and others as responsibilities shift
and family relationships change.
Stroke support groups allow stroke survivors to help
themselves and other survivors create meaningful
lives after stroke. Coming together in an atmosphere
of caring and cooperation, survivors, their family
caregivers and friends can forge a new sense of
community. New goals and friendships are started,
renewing hope and encouraging independence.
A sense of empowerment is at the heart of a “selfhelp” or “mutual-help” group. It can motivate passive
“patients” to become thriving survivors and create
active new roles for themselves. Stroke creates
many physical and emotional challenges. Each
stroke survivor faces a unique set of disabilities and
losses, and each copes with them in his or her own
way. However, the warmth, acceptance and
emotional support that a stroke support group offers
can often be the key to uncovering the hidden
strengths in many survivors.
There are no easy answers to the problems a stroke
can create. These changes can negatively affect the
survivor’s rehabilitation and recovery after getting
out of the hospital. The longer a stroke survivor is
not in society, the harder it is to rejoin society again.
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Dealing With Your Isolation as a Caregiver
When There Seems To Be No Hope
Peer support groups can be an important source of firsthand
information. They may also be crucial for the caregiver’s own
well-being. They can...
Chen’s family was very worried about him. Ever since his
severe stroke the month before, he had been acting very
strange. He had aphasia and couldn’t understand what people
tried to tell him.
• Help you learn more about your loved one’s condition,
including treatments, prognosis and what the future may hold.
• Provide information about the best community resources
(including day-care centers, assisted-living services and
home-care nursing), the most responsive professionals and
the latest equipment.
• Create networking connections so you’ll have access to the
best care possible.
• Lessen the sense of stigma associated with being disabled.
• Give you an opportunity to joke and laugh about your
circumstances with people who really understand and won’t
judge you.
• Give you an opportunity to cry and complain without others
making you feel guilty about your own needs and pain.
• Give you a moment to focus on just you.
• Alleviate your aloneness by introducing you to new friends
who understand.
• Help you brainstorm solutions to your problems.
• Relieve stress and help you feel more in control of your life.
• Give you hope as you listen to how others have coped in
similar situations.
Source: Adapted from Helping Yourself Help Others: A Book for Caregivers by
Rosalynn Carter ©1994.
Discovering the Value of Support
Social support is important in stroke recovery. Social
isolation has been called a risk factor for a poor
outcome after stroke. Family and friends provide
important support for many survivors, but stroke
support groups can also play a vital role in stroke
recovery. They can decrease the isolation of both
survivors and family, and introduce new friends to
replace those often lost after the stroke.
Stroke survivors not only face new disabilities, but
also possible medical complications and the need to
prevent recurrent strokes. A stroke support group
that empowers members with information and
provides emotional support can promote both good
health and a good quality of life.
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He seemed to have given up on trying to communicate. In fact,
he just sort of shut down. He often cried, too, which wasn’t at
all like him.
Elaine, Chen’s wife, and their grown sons knew this behavior
was unusual and that it probably required professional help.
First they discussed Chen’s aphasia with his speech therapy
specialist. They wanted to see what they could do to lessen
Chen’s frustrations.
“Just keep trying,” Cheryl told them. “If talking doesn’t seem
to work, try pantomiming. Try using pictures to communicate.
Be positive around him, too,” she said, “but be yourselves.
Reassure him and encourage him to stay relaxed. He’s been
through a big change, and it’s going to take time for everyone
to adjust.”
Still, despite their efforts, Chen seemed to withdraw more and
more. He began refusing to participate in his physical therapy
exercises, too. The family spoke with Chen’s physician next.
“I wanted to see if we could shake this without resorting to
medications, but if Chen isn’t participating in his physical
therapy, that could just complicate his health down the road,”
Dr. Michaelson said thoughtfully. “We’ll try this for a little
while and see if it helps. I think if we can just get him through
this, he’ll be OK.”
Dr. Michaelson put Chen on antidepressant medication and
monitored him carefully. The family noticed that Chen’s mood
seemed to improve. He began to respond again to their efforts
at communication. His speech and physical therapy began to
show more progress, too.
The family was greatly relieved. Now they felt they were back
on track. But they knew they had a lot to learn about stroke and
depression. It was clear that Chen’s illness had affected them,
too. With Chen’s agreement, the whole family joined a stroke
support group. Every week they got together with other families
that were experiencing the same things they were. It felt good
to have a place where they could get their anger, fears, and
confusion off their chests. The best part was being with other
people who understood what they were going through.
Source: American Heart Association Family Guide to Stroke, ©1994, American
Heart Association. Published by Times Books, a division of Random House,
Inc., 1994.
Finding a Way To Help
Stroke families can’t benefit from belonging to a
support group if none exist in their community. You
can help by organizing a new stroke support group
in your community or strengthening an existing one.
There are many ways to start and sustain a stroke
support group. What works for one group may not
work for others, since members are unique. The
purpose of these guidelines is to help you plan a
group that fits the needs of your members.
Coming Back: You’re Not Alone
My first source of information was the public library. I took
out every book I could find, some of them twice, which gave
me some answers to my questions. Then, fortunately, I heard
about stroke groups. An announcement in the local paper
invited anyone interested in such a group to a meeting at the
library, and thus the Wright County Stroke Club was born.
This fledgling group, with no funding and little support, was
my ray of hope.
I knew that a stroke group could not make my husband less
aphasic or more alert or stronger physically. But here were
people — wonderful, caring, dear people — who understood
what my problems were. They, too, were seeking to put the
pieces of their lives together again. They, too, knew the joys
of small successes, as well as the heartache of continued
failures in the long journey to a more meaningful and normal
life. We were not alone!
— An excerpt from “Odyssey” by Inez Thoren, Caregiver, Stroke Connection
Magazine November/December 1983
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II
How Are Stroke Support Groups Started?
Setting Goals
The purpose of a stroke support group is to provide
stroke survivors and their family caregivers an
opportunity to support each other as they strive to
rebuild their lives and promote health, independence
and well-being. Goals clarify what the group wants
to accomplish. Consider these items as you develop
the goals for your group:
• To provide accurate information for group
education that promotes a better understanding of stroke recovery, rehabilitation and
prevention of recurrent stroke.
• To offer a way for stroke survivors to meet
others with similar challenges and experiences and provide mutual positive support.
• To renew hope and promote independence by
offering opportunities for survivors to
challenge themselves and continue to
improve their performance of daily living activities.
• To provide caregivers and family members a
structured way to share and support each
other.
• To offer stroke families the resources and
support they need to live an active and satisfying life while coping with their losses and
disabilities due to stroke.
The goals of a stroke group should change as the
group’s membership and focus changes. Review the
goals regularly and adapt or add to them. Here are
some more ideas:
• To encourage the active involvement of
survivors with aphasia who have difficulty
communicating in the group.
• To reach out to stroke survivors in communities without active stroke support groups.
Getting Organized
Starting a stroke support group takes a lot of work
but can be very rewarding. It’s extremely satisfying
to help stroke families rebuild their lives. Sharing
responsibilities makes getting organized easier and
gives others a sense of ownership. Laying a strong
foundation now will also have long-term benefits
such as dedicated members, widespread publicity
and committed leaders.
Contact stroke survivors, family members and stroke
healthcare professionals for more guidance. When
you talk to individuals or groups, tell them how group
members can benefit from friendly, supportive,
informal meetings. Once you find two or three interested people, you’re ready to take the next steps for
starting your group.
Organizing a new stroke group will be easier if you
include these components:
• A key person (or two!)
• An advisor, group facilitator or healthcare
professional
• A sponsoring agency
• A planning committee
Bright Ideas From Successful Groups
• To encourage and strengthen dignity and selfesteem by providing volunteer opportunities
within the stroke group and the community.
• To educate people in the local community
about stroke prevention and stroke disabilities.
• To reach out to new stroke survivors and their
families by providing a support service such
as the American Stroke Association’s Peer
Visitor Program.
• To improve communication and understanding
among stroke families.
• To offer support uniquely designed to help
stroke family caregivers.
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Some ingredients for a viable group...
•
•
•
•
•
•
• A capable planning committee
Committed leader(s)
A variety of interesting programs
Capable volunteers
Community recognition
At least one sponsoring agency
Good planning
Don’t reinvent the wheel
If you are starting a support group, consider consulting
with those who have done it before:
• See the helpful organizations listed in section VI
of this guide.
• Call the American Stroke Association Stroke Family
“Warmline” at 1-888-4-STROKE (1-888-478-7653)
for advice.
• Visit another stroke support group in your community.
• Talk to leaders of other types of support groups
in your area.
Finding Leaders and Facilitators
A key person (or two) is someone who has a prime
interest in organizing a new stroke group. This
person may be a stroke survivor, the caregiver
of a stroke survivor, or a social worker or other
healthcare professional from a rehabilitation center
or community services agency. It’s important for
this person to be able to commit the time and effort
needed. Whether the key person or the sponsoring
agency comes first varies with the community.
Typically, a need surfaces and the order follows
logically. Direction may be needed, but a stroke
support group will emerge.
The role of an advisor or group facilitator will vary
with individual groups and as groups pass through
different stages of development. An advisor can act
as an advocate and consultant, especially while the
group is forming. That role may shift to facilitator or
guide as leaders emerge and the support aspects of
the group become focused.
Both lay and healthcare professional facilitators can
share their unique perspectives. However, the
collective experience and knowledge of the group
is more important than that of the facilitator. A good
facilitator must be able to empower the members to
support each other. That allows the internal
leadership to thrive.
An advisor or facilitator should have a strong interest
and ability to empathize with the problems resulting
from a stroke, and have good group facilitating skills.
Enlisting a qualified healthcare professional in this
role can enrich the group with additional knowledge
of stroke, rehabilitation and group process. A professional’s contacts in the healthcare community can
help members generate support and referrals for
the new group, and find speakers and other helpful
resources.
If a sponsoring agency is found first, its staff may be
able to recommend an advisor. The advisor’s main
duties are:
• To provide or be the liaison with the
sponsoring agency.
• To help manage the group.
• To facilitate the process as the group develops
programs, defines function, promotes
leadership among members, and helps
establish and carry out the group’s goals.
Obtaining the commitment of a recognized organization can be very useful in helping the group reach
its goals. A sponsoring agency can also help provide
continuity as the group evolves and its membership
changes. The agency could be the local office of a
national organization, a hospital or rehabilitation
center, or a community service group. Some
possible organizations that may be interested in
sponsoring a stroke support group include:
❏ American Stroke Association, a division of the
American Heart Association
❏ Nursing homes
❏ Easter Seal Society
❏ Nurses associations
❏ Hospital rehabilitation departments
❏ YMCA and YWCA
❏ Community rehabilitation centers
❏ Outpatient clinic
❏ Speech and hearing associations
❏ Family service agencies
❏ Senior citizens’ agencies
❏ Mental health groups
When you contact these organizations, ask if they
sponsor a stroke support group or plan to start one.
If there’s an existing group, you may want to visit
and ask them to partner with you to start a new
group. A partnership like this lets you share valuable
member resources.
A sponsoring agency may be able to provide some
needed services — such as meeting space — and
help with funds for refreshments and mailings. In
addition, many services and staff of the sponsoring
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agency may be available to help the group. Social
workers, speech/language pathologists, occupational or physical therapists, and other healthcare
specialists can advise or facilitate, or be involved
occasionally as guest speakers.
Bright Ideas From Successful Groups
• Form a professional advisory council.
• Involve a multi-disciplinary group.
• Get people to work who are motivated by
personal interest rather than a sense of
duty.
Forming a planning committee of three to five
members to plan the initial meeting and establish
some basic ground rules and an organizational
structure isn’t necessary but can be very helpful. A
planning committee can share responsibility and
help prevent leader burnout. This fosters a sense of
ownership among group members.
Forming a committee to guide your support group
provides a way for members to be actively involved.
It also establishes the group as a stronger entity in
the community. Involving stroke survivors and
caregivers on the committee is essential to
assessing the needs accurately and setting appropriate goals.
Recruiting healthcare professionals for your
committee can strengthen its credibility and also
increase its visibility. Healthcare professionals are
valuable to you for three reasons:
1. They know people who can present
educational programs on stroke
rehabilitation and mental health.
2. They meet stroke survivors daily who are
potential group members.
3. Their knowledge of the community and
stroke recovery and rehabilitation benefits
your stroke support group.
A committee may also be helpful if your group plans
to partner with community organizations, such as the
local American Heart Association office.
How long should your committee serve? That’s up to
you. Some groups never disband their committee.
Others use the committee until their support group
has become stable.
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Bright Ideas From Successful Groups
Groups may have difficulty in the
developmental stage because they:
• Lack volunteers.
• Lack attention from coordinators and
professionals.
• Fail to establish regular meeting times.
A survey of group leaders offered these
solutions:
• Develop a better business base.
• Ensure adequate funding.
• Get better community support by
sponsoring educational programs.
Next Steps
Once you have commitments from one or two key
people, the next steps are to locate a sponsoring
agency, a planning committee and an advisor or
facilitator. Your nearest American Heart
Association/American Stroke Association office may
be able to help.
Here are some steps adapted from those used by
the American Heart Association/American Stroke
Association Texas Affiliate office. You can adapt
these ideas to fit your group’s needs.
• Review advantages of developing a stroke
support group in your community with the
stroke program committee of your nearest
American Heart Association/American Stroke
Association office.
• Ask the American Heart Association/American
Stroke Association program committee about
helping to organize a stroke support group
and whether it would be a sponsoring organization. Review the advantages of involving
other organizations to co-sponsor the group.
• Ask the American Heart Association/American
Stroke Association program committee to help
organize a stroke group planning committee
made up of healthcare professionals (such as
physicians, physical therapists, speech therapists, occupational therapists, rehab nurses,
etc.); two or more stroke survivors and
caregivers; and one or two other interested
persons.
• Ask the planning committee to help locate a
suitable advisor or facilitator for the stroke
support group.
• The committee creates a list of sources for
new members with the planning committee,
including physicians, public health nurses,
Visiting Nurses Association, rehabilitation
hospitals and centers, VA hospitals, etc.
Committee members will ask these individuals
and organizations for stroke survivor referrals.
• The committee sends invitations announcing
the first meeting of the stroke support group
and publicizes the group.
• The committee may set the date and time for
meetings, choose a stroke survivor to lead the
meeting along with an advisor, and suggest a
meeting location, types of programs and
frequency of meetings.
• Before the first meeting, the temporary group
leader and advisor will meet with the
committee to develop a detailed meeting
agenda. This group can also identify potential
support group leaders.
• At the first meeting, the stroke support group
leader and committee will present their ideas
to the group. The members present at the
initial meetings will decide how often to meet,
the kinds of activities the support group will
sponsor and where the group will meet. An
acting stroke support group leader will be
chosen if one hasn’t been selected and how
long the term leaders will serve will be
decided.
• File a list of members and guidelines
governing your group with your nearest
American Heart Association/American Stroke
Association. The local office may want to
submit this list to the American Heart
Association/American Stroke Association
affiliate stroke group coordinator or the person
at the state level with stroke responsibilities.
• Review your group’s activities after six months
and make any changes necessary.
Bright Ideas From Successful Groups
• Ensure that the core group responsible
for organizing the new support group
meets several times before the first
official meeting.
• Be realistic about what type of service you
can provide.
• Involve stroke survivors at the outset.
• Visit another stroke support group.
Finding Members
Stroke support groups use different criteria for
membership. In addition to stroke survivors, some
groups include individuals with other medical conditions, such as head injury and other disabling
conditions. Restricting membership to survivors of
stroke or perhaps other types of brain injury keeps
problems and challenges similar. This allows group
members to more strongly identify with one another.
Advocates of a broader membership believe that
added diversity makes for a more interesting group.
Broad membership often attracts more members to
the support group. Your group can include family
members and friends of stroke survivors, or you can
create a separate group for caregivers. You may
want to experiment with your membership.
You’ll probably attract enough people to your first
few meetings. Over time you’ll want to involve more
people to keep attendance high. Aside from your
personal contacts, some reliable sources for new
support group members are physician referrals,
healthcare professionals, public health agencies,
social services and the ministry. Community publicity
is another way to attract interested members and
their families.
The first meeting is very important. Allow enough
lead time for extensive publicity so information can
be circulated. The first program should be wellplanned, constructive and purposeful. It could
feature a healthcare professional speaker on a topic
dealing with the psychosocial aspects of stroke as it
affects survivors and families. The speaker should
be well-qualified and understand the goals of the
group. Another option is to feature a stroke survivor
who has made a successful adjustment to a
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changed lifestyle after stroke and can give an
inspiring presentation. The first program should also
highlight these items:
• Purpose and goals of the stroke group
• Possible organizational structure
• Possible future programs
• Role of sponsoring agency, committee
members and leaders
• Introductions of those attending with brief
background information
Bright Ideas From Successful Groups
Choosing a name for your stroke group
can help build group cohesiveness and
a sense of identity. Names range from simple
to elaborate: Bethesda Stroke Support Group
to Stroke Victors, Rebounders, Speak-Easy,
Different Strokes, and Victory Over Stroke. Your
planning group can choose a name, or you can
let your first group members take part in the
selection. However you do it, make it a fun,
light-hearted project.
• Many meeting rooms are free. Personally
inspect meeting facilities before you accept or
reject them.
• Choose a safe, easily accessible location with
ample parking. Notice restroom availability,
noise level, lighting and ease of entry in the
facility you’re considering. Policies regarding
building hours, janitorial services and refreshments will play a big part in your choice. For
instance, if you want to serve refreshments at
your meetings, consider a meeting facility with
a kitchen.
• A clean, cheerful meeting place with plenty of
room to seat everyone will enhance the
quality of your meetings. Possible locations
include:
❏ Your local American Heart Association
office
❏ Hospitals
❏ Rehabilitation centers
❏ Nursing homes
❏ Easter Seal centers
❏ Adult day care centers
Be sure that everyone who attends feels welcome.
Use nametags and designate some committee
members as “hosts.” Serving refreshments is a
must!
❏ Speech/hearing centers
Identifying a Meeting Place
❏ Community halls
How often and when you hold meetings is up to you.
Groups meet weekly, every other week, monthly and
even every other month. Monthly meetings are the
most common. Afternoon and evening meetings are
more popular than morning meetings, although
some groups do host morning meetings. Most
support groups meet on weekdays.
❏ Libraries
• Choose a convenient time for you and the two
or three people working with you. Later, if
members prefer, schedule meetings that are
more convenient for the group.
• Most meetings last 11⁄2 to 2 hours and offer
programs and social time. Your meetings
should be long enough to offer value and
short enough to avoid being tiresome.
• Meeting in the same place eliminates
confusion, so scout around to find a convenient location.
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❏ Senior citizen centers
❏ Civic centers
❏ Churches
❏ Schools
❏ YMCA and YWCA
❏ Shopping centers or malls (some malls
offer unoccupied space to nonprofit groups)
Elderly members are often reluctant to drive during
evening hours, on busy highways, or if there is bad
weather. Some groups don’t meet during the winter
months because of weather, while others take a
break in the summer when members may be too
busy. Transportation can challenge your stroke
support group, no matter when you schedule your
meetings. Check your community services and
public bus service for vans and special transportation for members who are unable to drive.
Carpooling may be another solution.
Acquiring Funds for Activities and Other
Expenses
Funding for stroke groups can vary greatly
depending on whether a local organization has
agreed to sponsor the group and its activities.
Consider working with an organization or collaborating with your local American Heart Association for
meeting space, use of equipment, refreshments,
postage…in exchange for the members’
commitment of their time to volunteer when help is
needed for local stroke outreach events.
Support groups report these main expenses:
• Publicity-related: printing, copying, postage,
advertisements
• Group bulletin or newsletter
• Refreshments
The group should make the decision to collect or not
collect fees. Some groups collect $1.00 annually,
quarterly or monthly. Stroke groups report that the
money is used mostly for refreshments. If you
charge any fees, remember that some members
may not be able to pay. You may consider fundraising projects once your group is strong enough.
These projects can finance events that build bonds
among members.
Regarding Stroke Groups
Here are friends — people who do not shy away from us
because they are uncomfortable trying to communicate with us.
They have experienced, in varying degrees, the same anxieties,
frustrations, anger, hopes and despair we have. Here are people
who can truly share our feelings when we are “down” as well
as the elation of victory when progress, however small, is made.
We see others who are even less fortunate than we are and it
makes us thankful. We see the accomplishments of those who
have worked hard and long to make it to where they are, and it
inspires patience. We see the cheerfulness and courage of those
whose lives have been devastated in a manner similar to ours,
and it gives us hope.
(An excerpt from “Odyssey” by Inez Thoren, caregiver, Stroke Connection
Magazine November/December 1983)
10
III How Do We Make Our Stroke Group a Success?
Developing Opportunities for Providing
Caring Support
Sharing concerns and supporting each other are at
the heart of any successful support group. Common
experiences and challenges will draw stroke families
together. But it doesn’t just happen. It’s a process
that needs to be facilitated or “helped along.” The
group leaders and facilitators can set an example by
instructing members in what is needed to develop a
wealth of sharing and support. Three necessary
elements are discussed in this section.
• Making careful word choices
• Establishing group guidelines
• Using good listening skills
Making Careful Word Choices
Establishing Group Guidelines
Setting up a number of guidelines for your stroke
support group can establish the pattern for encouraging, helpful interactions at meetings. Objections to
support groups raised by healthcare professionals or
reluctant stroke survivors can be addressed by
establishing group guidelines. Guidelines can
reassure potential members who may be wary of
being pushed to share more, or who fear information
won’t be held in confidence. Guidelines can also
give the leader or facilitator a way to gently remind
members of appropriate ways to interact with each
other. Here are some potential group guidelines:
• Recognize and respect that every stroke
survivor is unique in their injury, experience,
way of coping and goals.
How stroke survivors speak of themselves and how
others refer to them can affect how survivors think of
themselves. The terms “stroke survivor” and “stroke
victim” are an example. “Stroke victim” implies
weakness and illness, while “stroke survivor”
focuses on a person’s resilience and hopefulness.
Surviving a stroke and working at rehabilitation
require strength of both body and spirit. Using the
term “stroke survivor” recognizes that.
• A successful stroke group is a group effort.
Many other words are commonly used by healthcare
professionals and also stroke families, but they may
be perceived as negative and demoralizing. The list
of words below can help group members discuss
their own perceptions and work at expressing
themselves in a supportive and empowering
manner.
• Attempts to “fix” the problems of other
members are inappropriate, but “listening is
helping.”
A Language of Stroke
Word Choice Exercise
YES WORDS
11
NO WORDS
• stroke survivor
• stroke victim or
stroke patient
• experienced a stroke
• suffered a stroke
• brain injury
• brain damage
• stroke deficits
• handicaps
• challenges
• difficulties
• a person with a disability
• crippled
• caregiver/care partner
• caretaker
• Information shared in meetings must be kept
confidential.
• All members must be encouraged to share, or
to listen, when they like, and to try to actively
listen when others are talking.
• All members are expected to be nonjudgmental in their responses and to be
respectful of other members.
• Good listening skills help and encourage
everyone.
Bright Ideas From Successful Groups
• Hold training sessions for the stroke
support group leaders.
• Stay current on stroke-related issues.
• Build and maintain a volunteer pool large
enough to ensure that one person doesn’t
have to bear all the responsibility.
• The stroke group meeting does not take
the place of medical care, and we don‘t
give medical information to each other.
Sharpening Your Listening Skills
The value of support and sharing in a group rests
in members offering true, non-judgmental empathy
and understanding. The great variety and magnitude
of losses and concerns shared in a stroke support
group can be challenging to members. Some will
seem overwhelming and others small compared
to what individual survivors have had to deal with.
The survivor expressing sadness over her inability
to wear high-heeled shoes is not comforted by
friends who comment that “it’s no big deal.”
However, a fellow survivor’s reply of “I was also
upset when I found I could not wear dressy shoes
with a nice outfit, because it changed my whole
body image,” allows the survivor to share that small
loss and move past it. The key is to remember that
each stroke is different, and each survivor and family
handles them differently.
Communicating in a Language of Support
Basic listening skills are crucial. They give group
members the ability to be helpful to other stroke
families without trying to fix their problems or give
advice. These skills provide a “language of support”
for members who want to help each other. Members
must internalize the message that “listening is
helping” and understand that the goal is to help
others through the process of grieving their own
losses.
Group members should be told that negative
responses are all too common in the normal conversations we hold with friends and family. They often
cause anger, sadness and disappointment over our
lack of “communication.” Unfortunately, group
members can do harm if they fail to use basic
listening skills. Facilitators can remind participants of
conversations they had after their strokes that
frustrated them or raised false expectations.
Learning basic listening skills will give members
reliable skills to cope with even the most challenging
stroke group discussions. The goals of learning the
listening skills are:
• To encourage the person to share information
and feelings.
• To show your interest and caring.
• To show you understand what you’re hearing.
• To learn to be cautious before confronting
individuals or giving advice.
• To stay focused on the other person’s story
and feelings.
• To respect the stroke family’s feelings and
values.
Practicing Listening Skills
Listening skills instruction should be done by
modeling the skills, paying attention to how
members communicate and encouraging them to
use the basic skills. Listening skills combine listening
with prompting the group member to share
concerns, resolve issues and plan for the future. The
goal is to listen without bias and with respect for the
speaker. Confidentiality should always be
maintained. An exception would be someone
qualified to help share concerns about the safety of
the speaker.
These basic listening skills give the leader or facilitator a way to gently remind members of appropriate
ways to interact. Discuss these skills during group
meetings and practice them. Make sure members
can recognize when they aren’t upholding helpful
qualities and standards. Using these skills will
increase the group’s effectiveness and will enhance
the support that members receive. Good listening
skills are your best assurance that the stroke
support group will provide a safe environment and a
helpful service.
Providing Basic Instruction
The listening skills aren’t complex. However, many
stroke survivors and family members have difficulty
abandoning old ways of communicating, particularly
in a stressful situation. The skills are designed to be
taught gradually and reinforced repeatedly. Many
stroke survivors need time to assimilate and process
the information, and then to incorporate it into their
interactions in the support group.
The basic listening skills information that follows will
help the facilitator introduce the concepts and lead
class discussion. The facilitator should read and
study them before introducing them to the class.
More detailed information on listening skills is
contained in the American Stroke Association Peer
Visitor Program kit. It includes detailed instructions,
demonstration exercises and practice exercises.
The PVP kit is available by calling the American
Stroke Association Stroke Family “Warmline” at
1-888-4-STROKE (1-888-478-7653).
12
A Personal Experience With the Stroke Support
Group
“The courage I have witnessed, the depth of feeling in which
I’ve shared, and relationships I’ve established have allowed me
to grow both personally and professionally. I have enjoyed the
experience immensely and would recommend it to anyone as a
very rewarding challenge.”
(An excerpt from “Stroke Group Development” by Mary Ellen Mussman, Stroke
Connection Magazine, September/October 1993)
13
Language
of Support
…basic listening
skills for
volunteers to
remember.
1.
Concentrate on what the other
person is saying…
…not on what you want to say next.
2.
Encourage the person to share
information and feelings.
Ask questions that say “I care.”
3.
4.
5.
6.
Show support and caring.
“You’re doing the best you can.”
“It’s not easy, I know.”
• Do not give advice.
STOP
• Do not deny or devalue
the feelings of others.
CAUTION
• Avoid comparing
stroke stories.
• Only talk about
yourself to show
empathy with others.
Show you understand what you
heard.
Respond with, “What I’m hearing you
say is…”
“Did you mean that you want to…?”
“You seem concerned about…”
Use non-judgmental responses, not
put-downs.
“Every stroke is different.”
“I see what you mean.”
“Families handle things in different
ways.”
• Do not correct, confront
or judge others.
• Ask caring questions.
GO
• Support by listening.
• Provide encouragement.
• Offer options, helpful
tips and resource
information.
Listening is helping. Listening is
ENUF*!
E Empathetic
N Non-judgmental
U Understanding
F Focused on feelings
*This information was adapted from: Rogers, Carl. Client
Centered Therapy, Riverside Press, 1960; and others.
14
IV What Type of Program Activities Should We Plan?
Staying Flexible
Self-help organizations report that people are drawn
to groups that provide emotional support and a
sense of community. Resist the temptation to plan a
full agenda of programs too far ahead or book
professionals as speakers too often. This can make
it hard for the group or the leaders to respond to
members’ needs. It’s important to be flexible and to
try for a balance in the type of programs offered.
Time for sharing concerns, addressing problems and
celebrating accomplishments is essential to developing a sense of caring and togetherness.
Striving for Balance
Educational goals and timely information are
important. A good speaker and/or educational
videotape can do the job. If you follow an educational program by a few carefully chosen questions,
it can turn into a lively discussion and meet dual
goals. Remember, schedule social time for getting to
know each other and sharing.
Occasionally the group just needs a change of pace
and a break from focusing on stroke. A family
potluck meal, entertainment or a group outing can
also stimulate new topics and new ways of helping
each other. Stroke survivors can be encouraged to
try things with the group that they might not try on
their own, such as warm-water exercise or bowling.
Stroke support groups can play a vital role in
survivors’ lives by providing new challenges and
opportunities. Group members gain confidence after
the initial period of adjustment. They may wish to
extend a helping hand to others by educating their
community or getting involved in stroke advocacy
issues.
Involving Members in Planning
Support group leaders are often encouraged to
involve group members in program planning, but
this may not be easy to do. At first it may be difficult
to solicit ideas as a group. Group leaders may feel
pressure to “produce” large attendance numbers
at the early meetings and may still be seeking that
“core of regulars” to stabilize the group. It’s
important to assess the group membership, needs
and “moods” often to find information for tailoring
meetings to their needs. But at first it may be easier
to poll members individually. Ask them at a time
when they can answer honestly and thoughtfully.
Be sure you hear from everyone, not just the most
15
vocal members. Make an effort to communicate with
survivors who have aphasia and people who don’t
return after a meeting or two. As the stroke group
grows and matures, this process should become
easier and possibly more of a group activity. Some
questions to consider:
• What did you like about the last meeting?
• What was the most helpful?
• What would you change?
• Do you feel welcomed at our meetings?
• Do you feel comfortable at our meetings?
• Are you feeling supported by the group?
• Is there enough time for visiting and sharing?
• Do you feel we are meeting our goals?
• How can we improve the service we are trying
to provide?
Keeping Your Goals in Mind
Planning programs and involving members in the
process may seem challenging at first. However,
once the group becomes established, the ideas
may be many and the time too short. The group’s
purpose and goals should provide a starting point
and offer focus for planning programs. It’s often
easy to lose sight of purpose and goals when the
group meets only once or twice a month and the
program suggestions begin to flow. The purpose
and goals should be reviewed often and updated
as needed, as the membership and their needs
change. When the common needs and goals are
clear, it becomes easier to design interesting and
successful programs.
Regarding the True Purpose of Support Groups
The personality of our group promotes warmth, sharing and
well-being. Though the group provides opportunities to share
hardships and concerns, the focus is more often celebrating
successes and supporting strengths.
(An excerpt from “Stroke Group Development” by Mary Ellen Mussman, Stroke
Connection Magazine, September/October 1993)
Providing Structure for Meetings
Support groups vary greatly in how they format their
meetings, but most leaders find having a certain
amount of structure to each meeting helps create an
atmosphere of comfort and acceptance. Having a
regular format with certain predictable elements
each time is reassuring to group members. A reliable
structure can be a reminder of the group goals and
ensure that time is set aside for what’s important. A
structured meeting format also makes it possible to
create distinct roles so members can be more
actively involved.
Formats can vary from a formal, business-like
meeting with officers reporting old and new
business, to those that simply begin with introductions and end with “See you next month!” The
danger of too much “business” is a lack of time for
sharing and support, and a loss of focus on the
goals of the group. Too little structure can result in
no sense of purpose or group cohesiveness. Again
the goal of the leaders is to balance the needs and
desires of the group members.
Here are some ideas to consider. Allow these
suggestions to stimulate your own ideas, and you’ll
have no trouble developing a format for your
meetings.
Group Business Items
Meeting Program
• Facilitator or guest speaker presentation
• Planned discussion topic — large or small
groups
• Videotape presentation
• Interactive group exercise
• Entertainment or social activity
• Group community outing
Bright Ideas From Successful Groups
•
•
•
•
•
• Gear your meetings to the needs of the
membership.
Avoid becoming too formal in structure.
Don’t elect officers until after the first year,
if you choose to have officers.
Provide refreshments at meetings.
Be well prepared and well organized before
the group starts.
Provide time for members to mingle, talk
and get to know one another.
• Welcome and introduce members and guests
• Announcements
• Read group purpose and goals
• Review group guidelines
• Highlight minutes from last meeting
• Financial report
• Social activities report
• Program planning time
• Community service planning
• Topic for following month’s program
• Old or new business
Beginnings and endings of any group get-together
can have a tremendous impact on the mood of the
group. A warm welcome sets a tone of acceptance
and helps members feel comfortable. An encouraging and upbeat send-off will leave members with
a good impression and encourage people to return.
Some group leaders like to open with an exercise
that helps members get to know each other (an
“icebreaker”). A review of group goals and guidelines
can also serve to “warm up” the group and remind
them why they are there. Efforts to end on a positive
note can be facilitated by sharing accomplishments
or perhaps an inspirational quote or reading.
Social Elements
• Share “milestones” such as birthdays and
anniversaries
• Informal visiting time with refreshments
• “Icebreaker” exercise
• Share accomplishments — large and small
• Exchange of helpful resources and
information
• Share inspirational quotes or readings
Regarding the True Purpose of Support Groups
The Peoria, Illinois, support group asks the following
five questions at every meeting:
1. Who has a birthday this month? (Celebrants
stand and share the date, but they don’t have to
reveal their age!)
2. Who has a wedding anniversary this month?
(Couples stand and share wedding date and how
long they have been married.)
16
3. Who has made some improvement in their
physical condition this month? (Members
stand to demonstrate their improvement.)
• Pharmacist on medications, side effects,
interactions, record keeping
4. Who has done something for the first time
that your spouse or caregiver once had to
do for you? (This is an important milestone for
the stroke survivor and caregiver.)
• Home exercise programs
5. Has something funny happened since your
stroke? (Humor is important for everyone, but
particularly for stroke survivors. The group
leader has a story ready, if no one has a
response.)
Deciding on Educational Programs
In the changing world of healthcare, people spend
less time in the hospital, in rehabilitation, and with
their doctors. This makes education about stroke
recovery and rehabilitation — and strategies for selfcare and self-advocacy — increasingly important.
• Controlling high blood pressure
• Warm-water exercise
• How right and left hemisphere strokes cause
differences in behavior
• How to help someone with aphasia
communicate
• Cerebral physiology, with discussion of
paralysis and paresis, seizures and
anti-seizure medications
• Low-sodium, low-cholesterol and diabetic
diets and healthy holiday party foods
• Drug and non-drug therapies
• Sexual functioning and intimacy after stroke
Psychological Issues
Educational programs are generally well attended
because they give members practical information.
They also tend to be non-threatening to people who
are still uncertain if a support group is right for them.
Having outside speakers may bring in large
numbers, but the group can lose the intimate atmosphere needed to foster sharing and support.
Remember to balance educational presentations
with time for discussions and sharing. Here are
some suggested topics:
• Emotional responses to stroke and changed
self-image
Health-Related Topics
• Coping with stroke issues — survivor and
caregiver perspectives
• Stroke rehabilitation presented by a variety of
medical practitioners: doctor; RN; speech
pathologist; physical, occupational and
recreational therapist; psychologist; social
worker; or dietitian
• Continuing to improve skills after rehab ends
• Impact of stroke (profiles in courage)
presented by stroke survivors and their
caregivers
• Stroke educational videos
• Adaptive equipment
• Coping with stress
• Recognizing and treating depression
• Dealing with anger
• Spirituality
• Relaxation techniques
• Meditation lecture
• Psychological factors of chronic disabilities
• Communication and interpersonal family
relationships
Legal and Financial Issues
• Financial impact of stroke presented by a
financial advisor, lawyer or Social Security
representative
• Stroke causes and up-to-date medical,
surgical and rehabilitative care
• Legal rights of people with disabilities
• Physical management of stroke survivors at
home and therapeutic services
• Volunteer opportunities
• Medical questions and answers on the
prevention of a recurrent stroke
18
• Death and dying (Compare responses of
families with terminally ill patients with stroke
survivors.)
• Employment issues
• Health insurance and Medicare
• Information on Living Wills
• Social Security
• Estate planning
General
• Presentations by representatives of a local
health department, civic groups, police, fire or
sheriff departments, and other community
resource groups
• Safety for seniors
• Travel and nature films
• Book reviews
• CPR and/or Medic Alert programs
attend a meeting a way to review the material.
Encourage members to audiotape the presentation if
they’d like to refresh their memories later.
The American Stroke Association is a good source
of educational materials. Written materials include
Let’s Talk About Stroke, a set of 19 information
sheets on topics of interest to stroke survivors and
their families. Booklets on aphasia, behavior after
stroke and sex after stroke are available along with
many others. A series of four educational stroke
videotapes on support and rehabilitation is available.
Call the American Stroke Association Stroke Family
“Warmline” at 1-888-4-STROKE (1-888-478-7653)
for more information.
Finding Guest Speakers
Planning Social Activities and Entertainment
Locating speakers sensitive to the needs of stroke
survivors and their caregivers is easier today,
because more national attention is focused on
people with disabilities. When selecting guest
speakers, be sure they can interact effectively with
stroke survivors. Prepare them with information on
the group’s disabilities and concerns. Consider
tapping into the American Heart Association’s and
the American Stroke Association’s online resources.
Planning is the key to having interesting programs.
Many groups plan their educational programs six
months to a year in advance. Have a few contingency programs ready in case your speaker can’t
come. Your local library is a good resource for
program content.
These events can meet members’ need for fun and
outside activity. Sometimes the group just needs to
take a “breather” from focusing on stroke. Here are
some ideas for group activities to help you develop
your own list. Outside events like these foster a
more active and involved support group.
Meeting Special Needs
Each group member should be asked if they have
any special learning challenges or needs. Larger
print handouts and audio recordings of the reading
materials are two ways to help stroke survivors with
these special needs. If audio recordings are not
possible, a survivor with aphasia might ask their
spouse or a friend to read the materials to them.
Flip charts, slides and overhead transparencies help
teach stroke survivors. Many need to “hear and see”
what the presenter is saying to understand the
material. Some stroke survivors may have trouble
following a film or video and would benefit from
seeing it more than once. Arrange for them to view
the video at home as often as needed.
In addition, all of the speakers could be audiotaped
or videotaped. This gives members who could not
Just-for-Fun Group Activities
• Music performed by a community group
• Group birthday party
• Family potluck meal — each bring a healthy
dish to share
• Restaurant meal
• Organized group games
• Field trips to museums, sports events, shows
• Picnics
• Holiday theme parties or outings
• Card playing
• Singing
• Visit other stroke support groups
Challenging Stroke Survivors
Stroke survivors may have many physical and
emotional difficulties to overcome. These can give
you opportunities to challenge the members of your
group. Challenging stroke survivors in the group
setting can help them regain confidence and
become bolder about trying new activities on their
own. Often an old hobby or interest can be revived
with a little adaptation or a lot of practice. Plan some
programs to enhance members’ leisure time or help
them find ways to stay physically active. Many times
19
no one asks a stroke survivor to do anything,
because they assume the survivor can’t. But no one
gets better unless they are challenged. That is what
recovery is about. Use the ideas below to stimulate
the imagination and try something new.
• Golf
• Camping
The list of “Psychological Issues” topics found under
Educational Programs on page 18 can be a starting
point for finding appropriate ideas for discussion
topics. To facilitate helpful sharing, the focus should
be on group members’ feelings.
• Journal writing
Extending a Helping Hand
• Bowling
• Warm-water exercise
• Fishing
• Art therapy
• Music appreciation
• Arts and crafts with adaptive techniques
• Dance classes
• Horticultural and gardening tips for stroke
survivors
• Photography
Encouraging Group Discussion and Peer Support
Opportunities to share concerns and to support each
other are an integral part of any successful support
group. For a stroke support group to truly be
supportive, these elements are needed:
• Time for sharing
• Trust
• Good listening skills
Time for sharing must be set aside as a group
priority. Allow enough time for everyone who wishes
to participate. Recognize that smaller groups of 6–12
people are generally more conducive to sharing.
Consider providing space for a larger group to break
into several smaller ones. If family members attend,
it helps if you encourage separate and private
discussions whenever possible.
People offering personal information and insights
need to be reassured that their opinions will be
respected and what they say will be kept confidential. Some people are uncomfortable talking
about anything personal, and their reluctance must
be respected. Section III discusses setting group
guidelines to help members and leaders establish a
safe, comfortable process for group sharing.
Once members feel comfortable and trust the group,
both the range and magnitude of losses and
20
concerns they share will increase. So will the
challenge to group members who truly want to help
but don’t know how. The basic listening skills shared
in Section III can help leaders, facilitators and group
members provide what is needed to develop a
wealth of sharing and support.
Stroke survivors generally lose their community
connection through loss of jobs, social affiliations and
former responsibilities. With these connections gone,
they easily lose a sense of their value to the
community. The stroke support group can strengthen
members’ self-esteem by helping stroke families
view themselves as educators and advocates who
extend a helping hand to the local community. Stroke
survivors and caregivers can have a great impact on
local efforts to spread the word about stroke.
Consider these activities for more stroke group
community involvement:
• Find out if there is a Train To End Stroke team
in your community.
• Volunteer at your nearest American Heart
Association/American Stroke Association to
work at the registration table for a Heart Walk
or local gala.
• Volunteer to work at a display with educational
materials about heart disease and stroke.
• Set up an informative meeting on stroke for
the general public or the staff of a local
hospital.
• Offer to serve as “practice patients” for
students of speech, occupational or physical
therapy.
• Assist with mailings or other American Heart
Association/American Stroke Association office
duties.
• Assist at school events. Children aren’t afraid
to ask stroke survivors about their condition.
Survivors can deliver great messages to
children about health, smoking and nutrition
habits.
• Ask your leaders to visit with the executive
director of the local American Heart
Association/American Stroke Association and
offer to serve on the board or committees.
• Distribute American Stroke Association
brochures and materials at health fairs.
• Get involved in service projects for hospitals,
nursing homes, orphanages, and charitable or
service organizations.
• Organize a stroke risk screening. This is a
general assessment of someone’s risk of
stroke determined by a blood pressure
screening and assessment. The American
Stroke Association has a kit to help you plan
and conduct stroke risk screenings.
• Maintain a speaker’s bureau so members can
speak at local civic groups and spread the
word about stroke prevention. Program
managers will love it.
Contact your nearest American Heart
Association/American Stroke Association for a
list of stroke-related materials and products or
call 1-888-4-STROKE.
Bright Ideas From Successful Groups
Regarding attendance and
membership, group leaders give the
following advice:
• Increase the quantity and quality of
publicity regarding your support group.
• Break into small groups if your group is too
large.
• Provide transportation and parking for
group members.
• Avoid long programs (more than 11⁄2 hours).
• Establish better relations with physicians
and encourage their input.
• Ask support group members to visit stroke
survivors who are hospitalized. Add their
names immediately to your mailing list and
follow up the visit with a note or card.
• Encourage stroke survivors to visit your
stroke support group before they are
discharged from the hospital.
• Appoint host couples for each meeting to
make new members and guests feel
welcome.
• Keep an up-to-date prospect list for
membership.
• Make personal contact with stroke
survivors’ family members.
21
V
Will Our Stroke Group Continue To Grow?
A WEALTH OF IDEAS TO SHARE
Variety Is the Spice of Life
Haig Selian, a caregiver in Naples, Florida, started
the Busy Strokers Stroke Group after his wife's stroke.
Over the years he has developed a simple strategy for
maintaining interest in the group: Do something
different!
If you like your meetings sedentary or sedate, don't
call Haig – the Busy Strokers do something new every
week.
There is so much variety, especially since they meet
every week, that everybody can participate in
something sooner or later. They have done everything
from bowling to putting, dog tracks to deep-sea fishing
and cruising. Don't try that in Kansas!
It's helpful to remember that you don't have to satisfy
everybody all the time. The larger the variety, the more
people will ultimately be attracted.
A Night on the Town
Stroke group leader Marie Tolly in Louisville,
Kentucky, combines a little culture with a lot of
camaraderie with a group activity she sponsors through
the Care and Share Stroke Group. Every month she
and her group sponsor an evening of dinner theatre.
Everybody goes to the same show, so they get a
group discount. The theatre, of course, benefits, but its
staff also have learned how to deal better with disabled
people. Although stroke group members always attend
the same dinner theatre, each event is independently
organized, so the responsibility for putting the evening
together gets passed around.
This is a great thing for stroke survivors, because it
gets them out of the house and away from the TV and
puts them into a public arena. This is invaluable for their
recovery.
Putting Them to Use
Stroke survivor Jim Faust in Alabama has found a
good use for politicians – invite them to stroke group
meetings! So far he has invited the mayor and several
local legislators to talk to his group, but he has an
ulterior motive: education. There may be no quicker
way to educate a politician or public servant to the
needs of survivors than by attending a stroke group
meeting. The discussion periods of these meetings
become a two-way dialog: The officials learn stroke
survivors' concerns when it comes to accommodations
and Medicare, and group members learn about
government priorities and processes.
These meetings give elected representatives a much
clearer view of what it is like to live with a disability.
Besides that, stroke survivors and their caregivers are
constituents, too, and their voices need to be heard.
22
Watching Group Members Come and Go
Attendance is a constant concern for many stroke
groups. The numbers can fluctuate for no apparent
reason, and members who seemed dedicated may
stop attending. There are many reasons people
miss meetings, and well-established groups report
attendance challenges identical to those that new
stroke support groups face. Poor health, transportation problems and generally stressful family
situations can contribute to low attendance rates.
Surveys of members attending regularly and those
who come and go may give useful information you
can use to address the problem. Most groups say
regular attention must be given to recruiting new
members and retaining current ones. Above all,
remember that numbers don’t tell the whole story.
An active, vibrant group doesn’t need large
numbers. Here are common challenges to member
recruitment and attendance:
• Lack of publicity and awareness of the group.
• Lack of transportation for members who can’t
drive to meetings. This includes reluctance of
some stroke survivors or their spouses to
drive at night or in bad weather.
• Lack of doctor’s referrals for new members.
• Attracting members to meetings.
• Determining membership makeup of the
group.
• Too many members (very rare).
• Overcoming initial negative reaction by stroke
survivors and their families to joining a group
of people with physical disabilities.
Reaching Out to New Members
To ensure your group’s future, recruit, Recruit,
RECRUIT! Do it constantly. Show sincere interest in
potential members by calling them and sending
them meeting notices and support group news.
Perhaps the most common (and most effective)
recruitment method is having a group member who’s
had a stroke tell another person about the group.
Enlist group members to scout out prospects and
bring them to your meetings. Stroke survivors often
make prospective members feel less self-conscious.
This kind of sensitivity can help your group thrive.
Personal contact generates the greatest interest, so
most groups simply produce a flier, descriptive
pamphlet and a newsletter. Consider occasional
visits with the communications director at your
nearest American Heart Association/American
Stroke Association office. You may find opportunities
there to promote your stroke group’s activities. You
may be able to provide the American Heart
Association/American Stroke Association office with
media opportunities and ideas to help integrate
stroke into their programs, events and activities.
There are many ways to publicize your group.
Newspaper and magazine articles have been
successful in gaining the public’s interest and stimulating potential members to attend a group meeting.
Other media, such as TV and radio, can give your
group added exposure. Consider these ways to
recruit new members:
Personal Contact
• Word-of-mouth is one of the most effective
ways to spread information.
Newspaper
• An announcement sent to a newspaper can
be very short, although a larger amount of
information can be printed in the paper if
space allows.
• The smaller community or neighborhood
newspapers may be willing to print more
information than larger ones.
• If your group has one or more sponsors, they
may be able to help you generate this form of
publicity. For example, a staff person at a
sponsoring agency will probably have a list of
media contacts. (That’s another good reason
for you to work with a sponsor as you
organize your group.)
TV and Radio
• Local TV channels or radio stations usually
produce community-interest programs where
your stroke group meetings can be
announced each month.
Other Media
• Invitations given to stroke patients by
healthcare professionals
• Letters
• Telephone calls
• Posters
• Bumper stickers
• Seminars
• Referrals from the local American Heart
Association or Easter Seal Society
• Community program announcements
Keeping Members Informed and Involved
If you want loyal group members, find relevant jobs
for them to do. When members are involved in
running the group, it becomes more “their group”
and they will take on more responsibility. Some
groups have officers, committees and sponsoring
agencies. Some rely on professional staff to
organize their programs. Others are directed by a
committee. Clearly spell out the areas of responsibilities for your group, decide how people will be
selected and how long they will serve. Committees
can carry out many duties like telephoning potential
members, sending cards and letters to members,
keeping a group scrapbook, membership records,
producing a newsletter, program planning, publicity,
refreshments, social activities and visitation.
Every aspect of a stroke support group presents
opportunities for recovery. Survivors can gain selfesteem with each step while doing something that
lets them see the fruit of their labor.
If you’re having difficulty with attendance or
meetings, consider these ideas:
• Promote interaction among members
between meetings.
• Start a telephone committee to call members
and remind them of upcoming meetings.
• Organize a transportation committee to bring
members to the meetings.
• Produce a newsletter.
• Involve members on a program committee to
plan programs, activities and other events.
• Identify candidates for leadership roles.
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Here’s the bottom line on improving attendance and
retaining membership in your support group:
• Make the group indispensable in the lives of
your members by challenging them in ways
that society as a whole will not. You never
know what people can do until they’re
asked. Experience shows that the stroke
survivors who transform their lives are the
ones who are progressively challenged to
do more than they’re doing.
A survey of stroke support group leaders discovered
these ingredients in their formulas for success:
• Members’ interest and enthusiasm, the single
most important factor
• Members’ positive attitudes about their
support group
• Friendships among members
• Maintenance of strong core groups
• Members that care for one another
Consider these methods of communicating with
members:
• Motivation and persistence
Pamphlets and Newsletters
• Recognition of members’ accomplishments
• Consider a newsletter or a one-page fact
sheet about your group.
• Newsletters are a popular form of publicity
because they’re more personal than
newspapers, TV or radio. See Section VI of
this guide for resources on publishing a group
newsletter.
• Focusing on successes rather than failures
• Sharing experiences
• Making members feel needed
• An inspirational group leader
• Spouses’ support of the group
You may not find your own workable combination of
ingredients overnight, but the process should be half
the fun!
Bulletins
• A bulletin could list the name of your stroke
group, where your meetings are held, the
time and date of your meeting (for example,
the fourth Tuesday of the month), and a
contact person and phone number.
Bright Ideas From Successful Groups
• Create a buddy system to foster caring
communication among members and
help new members feel at home.
• Acknowledge all members for the
contributions they make.
• Increase family involvement.
Finding the Secret Formula for Success
If there’s a secret formula for stroke group success,
it’s flexibility. Determine what the members want,
survivors and caregivers alike. Take into account the
levels of disability, then give your members what
they need to get what they want. Like in a one-room
school, the more experienced members help the
new arrivals.
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Regarding That Special Day of the Month
“On one day of the month we look forward to seeing and being
with these gallant people. Oh yes, the wide variety of programs
makes it interesting, informative, inspiring and entertaining. But
it is the people who draw us to this group — we see the warmth
of their smiles when we greet them, to feel the squeeze of a
hand and know the empathy and love which prompt it, to share
a small moment of triumph in our own or someone else’s
odyssey — this is what makes stroke group the supportive and
helpful occasion that makes that day special on our calendar
each month. Blessings on stroke groups!”
(An excerpt from “Odyssey” by Inez Thoren, caregiver, Stroke Connection
Magazine November/December 1983)
VI What Resources Are Available To Help
Group Leaders?
Note:
This information is provided by the American Stroke
Association as a resource list for our readers. The
organizations, associations and foundations listed are
not owned or provided by the American Heart
Association, with the exception of the American
Stroke Association, a division of the American Heart
Association, and American Stroke Association itself.
Additionally, the organizations may not have been
evaluated, so this list should not be construed as a
recommendation or endorsement by the American
Stroke Association.
National Resources
We at American Stroke Association are dedicated
to giving you a helping hand. The Stroke Family
Support Network serves as a resource for the most
up-to-date stroke information. We also want to share
information about some of the many organizations
that have resources available for stroke support
group leaders. Many are a toll-free phone call away.
We urge you to keep this list and use these organizations as often as necessary. And, of course, if
you want that one-on-one attention from someone
who has been in your shoes, call the American
Stroke Association Stroke Family “Warmline”
1-888-4-STROKE (1-888-478-7653).
American Stroke Association,
(a division of the American Heart Association)
Stroke Family “Warmline”
7272 Greenville Avenue
Dallas, Texas 75231
1-888-4-STROKE (1-888-478-7653)
www.StrokeAssociation.org
A toll-free referral and information line, free stroke
materials, daily living tips, referrals to stroke support
groups, a national stroke support group registry, and
the award-winning Stroke Connection Magazine.
The Stroke Family “Warmline” also offers a variety of
educational support services for stroke survivors,
caregivers, family members and healthcare professionals.
General
American Association of Retired Persons
(AARP)
601 E Street, NW
Washington, DC 20049
800-424-2277
www.aarp.com
AARP provides information relating to aging and
senior citizens. It also has literature for a variety of
health and benefit questions important to seniors.
U.S. Department of Health and Human
Services
Public Health Service – Agency for Health
Care Policy and Research
P.O. Box 8547
Silver Spring, MD 20907-8547
800-358-9295
www.ahrg.gov
Governmental publications are available on a variety
of stroke-related topics, including the widely
acclaimed Post-Stroke Rehabilitation Clinical
Practice Guidelines and Recovering After a Stroke:
Post-Stroke Rehabilitation Patient and Family Guide.
Rehabilitation
American Academy of Physical Medicine and
Rehabilitation
1 IBM Plaza, Suite 2500
Chicago, IL 60611
312-464-9700
www.aapmr.org
This is an automated information line that provides
listings of physiatrists in local areas.
American Occupational Therapy Association
4720 Montgomery Lane
Bethesda, MD 20814
301-652-2682
www.aota.org
This association helps people locate occupational
therapists in their local areas.
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American Physical Therapy Association
1111 North Fairfax Street
Alexandria, VA 22314
800-999-2782 or703-684-2782 or
www.apta.org
This national organization provides referrals to state
chapters.
American Speech-Language-Hearing
Association
10801 Rockville Pike
Rockville, MD 20852
800-638-8255 or 301-498-2071
www.asha.org
This organization can provide a list of speech therapists in your state.
National Aphasia Association
29 John Street, Suite 1103
New York, NY 10038
800-922-4622
www.aphasia.org
e-mail: [email protected]
This organization provides information and support
services for people living with aphasia.
National Association of Social Workers
750 1st Street NE, Suite 700
Washington, DC 20002
800-638-8799 or 202-408-8600
www.naswdc.org
This national association provides a list of local
social workers.
National Easter Seal Society
230 West Monroe Street, Suite 1800
Chicago, IL 60606
800-221-6827
www.easterseals.org
This organization helps people with disabilities
achieve independence by locating funding sources
to assist with medical and assistive equipment and
medical bills (on occasion).
National Institute of Neurological Disorders
and Stroke
P.O. Box 5801
Bethesda, MD 20824
800-352-9424
www.ninds.nih.gov
26
This organization receives funding from the National
Institutes of Health and provides clinical information
packets on stroke.
National Rehabilitation Information Center
4200 Forbes Blvd., Suite 202
Lanham, MD 20706
800-346-2742
www.naric.com
This toll-free number provides information on types
of rehabilitation, adaptive devices and other aids for
recovery.
Vocational Services for the Disabled
800-222-JOBS
A New York-based service that refers consumers to
local state offices providing vocational and educational services for people with disabilities.
Caregiver
Eldercare Locator
927 15th Street, NW, 6th Floor
Washington, DC 20005
800-677-1116
www.eldercare.gov
A nationwide database that gives caregivers access
to local area resources that provide care to the
elderly.
Family Caregiver Alliance
690 Market, Suite 600
San Francisco, CA 94104
415-434-3388
(in California 800-445-8106)
www.caregiver.org
This organization provides caregiver support and
educational opportunities through research,
advocacy, legal consultation and training workshops.
Flying Wheels Travel
143 West Bridge St.
P.O. Box 382
Owatonna, MN 55060
507-451-1685
www.flyingwheelstravel.com
This for-profit travel agency provides worldwide
travel assistance for the disabled for leisure and
vacation purposes only.
National Council on Aging
409 Third Street SW, Suite 200
Washington, DC 20024
800-375-1014
www.ncog.org
This organization provides lists of community
resources that help improve the quality of life for the
elderly.
National Family Caregiver Association
10400 Connecticut, Ave., Suite 500
Kensington, MD 20895-3944
800-396-3650
www.nfcacares.org
Mental Health
American Association of Suicidology
4201 Connecticut Ave., Suite 408
Washington, DC 20008
202-237-2280
www.suicidology.org
This association provides information on suicide and
a referral to the nearest suicide crisis center in your
area.
American Psychiatric Association
1400 K Street, NW
Washington, DC 20005
202-682-6000
www.psych.org
This organization provides information on choosing
a psychiatrist as well as research on emotional
illness.
National Foundation for Depressive Illness
P.O. Box 2257
New York, NY 10116
800-239-1265
www.depression.org
National Institute of Mental Health
6001 Executive Blvd., Room 8184
Bethesda, MD 20892-9663
800-421-4211
866-615-6464
www.nimh.nih.gov
e-mail: [email protected]
This organization is an educational resource for the
general public as well as healthcare professionals
on the co-occurrence of stroke and depression.
Financial
Medicare Hotline
800-MEDICARE
800-638-6833
www.medicare.gov
Call this toll-free number for information about
Medicare and financial assistance for persons over
65. They can also help find medical specialists in
local areas.
National Insurance Consumer Helpline
110 William Street
New York, NY 10038
800-942-4242
This toll-free number gives assistance with
questions about health and life insurance as well as
information about individual health insurance
companies.
Social Security
800-772-1213
www.ssa.gov
A national toll-free number that provides assistance
with Social Security benefit questions and makes
referrals to local Social Security offices.
This foundation provides information and referrals to
the public about depressive illnesses.
27
Employment
Children
ADA Helpline — Equal Employment
Opportunity Commission
National Information Center for Children
and Youth with Disabilities
P.O. Box 12549
Cincinnati, OH 45212-0549
800-669-4000
P.O. Box 1492
Washington, DC 20013
800-695-0285
www.nichcy.org
This is a toll-free number for information about
discrimination against people with disabilities in the
workforce.
Higher Education and Training for People
With Handicaps
800-544-3284
This is an automated information line that provides
information on post-secondary education for the
disabled.
IBM’s National Support Center for Persons
With Disabilities
800-426-4832
This is a clearinghouse to help healthcare leaders,
agency directors, policy makers, employers,
educators, public officials and individuals learn how
computers can enhance the quality of life in the
school, home and workplace for persons with
disabilities.
Patient Rights
People’s Medical Society
462 Walnut Street
Allentown, PA 18102
610-770-1670
This organization provides information to make
every American a smart healthcare consumer.
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This is an information, resource and policy center
focusing on adolescents with chronic illnesses and
disabilities and the issues surrounding their
transition to adult life.